Act Now For Autism is a core group of people passionate about the future and well-being of children and adults with autism and associated conditions in the UK.
Act Now For Autism are campaigning against aspects of the Welfare Reform Bill, specifically the WCA, Work Programme and the impact of the changeover to Universal Credit and PIP. We are ardently campaigning for advocacy to be offered to anyone who has to have a face-to-face assessment.

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Friday, 15 June 2012

Debbie has written a few guest blogs for us before, which were insightful and moving and this one is no different - have your tissues at the ready!

"Sign it, Say it, Sing it

Aged one, Matthew could sing.

He couldn’t really sing the words, but could hold a tune
beautifully.His favourite song was The
Wheels on the Bus and he'd hum away tunefully to himself while spinning the
wheels of his toy cars.After bath time
we would always sing Twinkle Twinkle and Baa Baa Black Sheep while settling him
down to sleep.He could join in with the
tunes and it was a joy to hear.

Aged two, Matthew stopped singing.

Sometime after Matthew's second birthday, in amongst the
turmoil of the endless waiting for appointments, the repeated answering of the
same questions, the sleepless nights and the desperate hope that it was all a
mistake, I noticed that he was singing less and less.In time Matthew had stopped singing
altogether.

I am a music lover.I
guess most people are.Music is, for me,
the background of life, constantly there in its many, many forms.And Matthew loves it too.He has always responded well to music, from
classical to dance to nursery rhymes and most things in between.But before Matthew was three he had learned,
and then seemingly forgotten how to sing.This was one more blow, a soft but meaningful blow at a time when they
were raining down.

Song provides one of the best and most enjoyable ways to
learn.If we know the tune, the words
stick too.We remember and
understand.So song is, of course,
extensively used by parents, speech therapists, play workers, nursery staff, school staff and
everyone involved in helping our children to learn.

And although no longer
singing, Matthew never stopped responding to song.Songs became an integral part of the
strategies that we learned to enable and encourage Matthew to communicate.Reward an achievement with a favourite
song.Sing a song after Matthew has
co-operated with getting dressed.Encourage him to use PECS (Picture Exchange Communication System) to request the
songs he loves.

Anyone who knows Matthew will know that he enjoys food at least
as much as he enjoys music, so of course food was, and remains, a huge
motivator for him, and we have utilised his love of food in exactly the same
way.But that’s another story...

One of the excellent strategies given to us by speech therapy
was to sing a favourite song and stop before the last word to encourage Matthew
to fill in the blank.He began to
communicate his desire for the word to be sung by eye contact, gesture or even
vocalisation.Communication in any form
is wonderful.At some point along the
way, this ceased to be a strategy.It
became the natural way to interact, always pausing, always withholding
something to give as a reward for communication.And in turn, Matthew would reward us with
fantastic eye contact, his own particular gesture, vocalisation and even, on
joyful occasions, the word.But never
the tune.

Matthew’s lack of singing caused me a niggling pain over the
years.Never overwhelming, but always
there.He used to sing so well, perhaps
one day he would sing again.I have
learned over the years to always hope, never expect.And so it was with singing.

From the age of three, Matthew was using PECS as his main
form of communication.He was also
exposed to Signalong, which is a very simple sign language.Signalong is used by professionals working
with children with additional needs here West Lothian.It reinforces the spoken word and children
who struggle to communicate verbally can often pick it up readily.

Aged five, Matthew was making certain gestures and these turned
out to be the actions to songs.

Aged seven, Matthew’s repertoire of signs suddenly expanded
and he could soon do the actions to many songs.

Signalong became Matthew’s preferred method of communication.
I attended Signalong classes in order to keep up.I was often describing gestures Matthew had
made in his home-school diary to find out what he had been requesting. But he
didn’t stop at requesting – he also began signing to point things out, to tell
me things. Now, when I paused during songs, Matthew would sign the next
word.

Aged eight Matthew’s speech began to develop.

I believe that signing was a significant factor in Matthew
beginning to speak, as it really showed him the power of communication.He still uses signing along with his speech
and if I can’t understand the word he is saying, I can usually understand his
gesture.As Matthew’s spoken vocabulary
expanded, he began to say the next word when I paused during his favourite
songs.He could request a song he wanted
to hear verbally.But he still didn’t
sing the tune.

Aged nine, Matthew is singing again.

I do not know how he learned to sing again.But gradually, signing and speaking the words
has become singing the song.He is
always in tune and so I always know what song he is singing.I can sing along him to help him to learn the
words.He sings away to himself all the
time and his repertoire is expanding rapidly.

And I cannot describe the joy I feel every time I hear
Matthew sing.It is the most beautiful
sound I have ever heard, and well worth waiting seven years for.The best things are always worth the wait."

Monday, 11 June 2012

We are always happy to publish guest blogs from our supporters around the UK. These are people living with autism who want to share with you a little about their life. Here Julie-Anne talks about her son Paul:

"Paul was born in 2001 in Antrim hospital N.Ireland after a
horrendous 30 hour labour and an emergency caesarean, he then spent the
first week of his life in the special care baby unit with congenital
pneumonia and a heart murmur. He then was taken back into hospital at 4
weeks old with severe chest and breathing difficulties. At one point
his heart stopped and he had to be resuscitated.

Paul then spent the
first 7 years of his life in hospital on a 3 monthly basis with severe
breathing difficulties. He didn't walk or talk until he was 2 years old
and was allowed to start nursery at 2 to overcome and help with this. We
were living in N.Ayrshire at the time.

Paul had a speech
therapist until he started p1 and was always different from other
children as he was very reserved and easily upset.

We moved to West Lothian when Paul was half way through p1.

Paul
was constantly getting into trouble when he was at school for either
not joining in with activities or becoming upset and having tantrums and
we never knew why. In p4 Paul was referred to the Educational
Psychologist on my request for observations, I was told that he was fine
and there was nothing wrong with him and he was referred to a Speech
Therapist to help with his language skills.

One day when Paul and I
were at the Speech Therapist she asked me if I would mind if she
referred Paul for testing as she thought he had autistic traits. I was
very surprised and shocked at this as my idea of Autism at the time was
the film Rainman. However I agreed to testing and a few months later
after several visits to different doctors and specialists and a lot of
form filling Paul was diagnosed with Asperger's.

I was very shocked
and a little relieved at this as I now knew why my son was different
from everyone else but I also felt like it was a case of 'here is your
diagnosis now go and get used to it'. I would have preferred some support
as I have no family near me.

The school when they were told of
Paul's diagnosis took it with a pinch of salt and never offered us any
additional support for Paul and told us we weren't entitled to any.

I
then discovered a support group for other parent's like myself and
discovered that yes we were entitled to help and support and I have been
battling ever since for this.

In the past year Paul has overcome a
few educational obstacles with the help of Autism Outreach and a few
meetings with the Outreach team, the school and myself and is now
allowed to use a laptop for extended writing and is also allowed to
stay indoors at playtime if he wishes.

Paul is now preparing for
his final year at primary school as he will be into p7 after the summer
and has been identified for an Enhanced Transition and so the school,
the outreach team and myself are working together to ensure we do all we
can to help his Transition go well. I find this much easier than a
few years ago as we are all working together on the same path to help
Paul be all he can be.

I am hoping he get's the help he needs when he starts at the high school and he continues to do well."

Sunday, 10 June 2012

We are absolutely delighted that one of our co-founders (and core group member) Anna Kennedy is on the Queen's honours list and will be awarded an OBE for raising autism awareness and setting up education and care facilities.

Anna has worked so hard over the years for the autism community. Whilst caring for her two autistic sons she founded and continues to run Hillingdon
Manor and Baston House School. Anna and her team have created the largest range
of specialist facilities in Europe and she continues to strive, she recently produced a DVD with legendary Pineapple Dance Studios (Step In The Right Direction) and last month she produced the amazing Autism's Got Talent show.

Here's what she said about getting her OBE:

"Obviously I am honoured and
my love for my sons and husband has kept me going. I hope to use this
award to springboard improvements and changes in the world of autism and
I will accept the OBE on behalf of all families who are affected by
autism."